Starting to figure it out five years later

This November will be five years since the rupture of my AVM. It’s been a very strange time trying to figure out what it means in my life.

I think for the first year after, I understood that it was supposed to be traumatic and it wasn’t something strangers expected to hear about. But for a couple of years after, I was telling lots of people. I thought it didn’t mean a lot to me. Sure, it was a significant event, but I felt like I was largely past it–after all, the event was years ago, and the doctor said I was clear after surgery.

But last fall, I had a nightmare–the first since the months shortly after my stroke. It was about a short period I was on the operating table before my final surgery. And since then I’ve occasionally started to freeze up and feel like I’m back there. Sometimes the back of my hand starts hurting where the IV was. In those moments, I feel like I’m underwater and that every breath is getting harder. I realized this year that maybe I’m not as past it as I thought.

I thought I was past it because I didn’t really feel anything when I thought about that month. There were only two times I felt terror back then–the night before my surgery and shortly before it the next day. But aside from that, I didn’t feel anything. I thought this meant I had processed what happened to me somewhere along the way.

It finally clicked last night that I didn’t feel calm or okay during that time. I felt overwhelmed with fear to the point I was frozen. I felt a strange sensation of my body wanting to move, to run, but with nowhere to go. I felt trapped. And for a few years after, I mistook feeling locked out of what I felt then for a feeling of peace.

Looking back on those years when I told many people about my stroke, I can’t help but wonder if I was looking at their reaction to figure out what mine should be.

I didn’t know how to feel about my stroke. I still probably don’t, but I think I have a better sense now than last year, and certainly in years prior.

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Hey Stuart,
I’m Merl from the Modsupport Team.
I think we all perceive our situation differently. I didn’t have a stroke but with my initial surgery, I wanted to get back to my life and that was my focus, looking forward. It was by no means a straight line of progression but I got back to work. Success (or so I thought). The surgery was not the success I’d hoped for, so they operated again. I thought, ‘I’ve been here before, I can do it again…’ but phew, this time was a real slog to recover from. It took me a good 3mths, but with determination (and medication) I got there. I had a goal, an aim, and that was my drive. I had a few years of ‘OK’, not great, but I could manage.

Then in '13 it all came crashing down. That year I had 3 neurosurgeries and, OMG, it all hit me hard. I again thought ‘I’ve been here before, I can do it again…’ only this time when I pushed myself, my body pushed back. I thought ‘this thing isn’t going to beat me’, so I pushed myself harder. Something went POP and I woke up in hospital. This gave me time, too much time, and my mind started asking questions, WHY? I went from blame. Whose fault is it? to self blame. It was my fault. I went through analysing everything and if I didn’t have a headache at the start, I sure did by the end.

I’m now 10 years on and I think I have a level of acceptance of it all, but that ‘level’ is on a sliding scale. On a bad symptomatic day, that level is low. I accept it, but I’m not happy about it all. Prior to '13 I used to teach people with disabilities, some in a much worse situation to mine and I’m not in their position. I have to be thankful for that at least. I can manage most days with medication, but still have those days that knock me really badly. I ‘try’ not to look back too much because I am annoyed I haven’t gotten the ‘old me’ back and I can accept that for what it is.

Merl from the Modsupport Team

Hi @Stuartt

I didn’t accept life after my bleed and used to stand in front of the mirror and try to rub my trachea scars away.
Sometimes I used to tell people and talk about my experience but it usually backfired and I got cross people couldn’t understand so I don’t talk about it now unless I’m asked a direct question. I wouldn’t ask someone why they had lost a limb so why should someone ask me about my brain scar.
I’ll talk about it if I think it’s helpful or necessary.

Enjoy your 5 year anniversary
Tim

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@Stuartt

You tell a very interesting and difficult story. I can’t say I was afraid in a similar way to you, either about my surgery or about the possibility of having a stroke. I was definitely very worried about both but the way you describe your fear feels much deeper than mine.

I am sure it is pretty normal to be bothered by this sort of thing, even five years later. It’s a big deal. I do think if you’ve got the resources to be able to talk to someone about it – I mean a professional – I’d definitely do that. And I also get the fact that it’s not something you can talk to family or friends about, probably so long after the event. Immediate family may well listen but often we don’t want to burden them; a first class friend would also listen carefully but I mean proper first class friend (and they are few and far between). I do think that this place is somewhere you can talk about this kind of stuff. There are definitely others who are dealing with a bit of what has got to be PTSD. How they get through it, how you get through it is a good thing to share.

How are you doing today?

Best wishes,

Richard

Hello @Stuartt,
Everything you said in your message made complete sense to me. I am a little over one year past my second craniotomy. I will freeze standing in the kitchen at home, on the station platform, walking in the street and I am ‘back there’. I feel as if I have fallen into a grey splintered world. I see myself going into the pre-op anaesthetic room, or waking up in neuro intensive care, or hearing my anaesthetist shout my name to try and wake me up (I ignored him). I even recently felt sick and icy cold when a man passed me in the street wearing the same shoes and trousers as my neurosurgeon. And yes, I have wanted to sprint and run but my body was somehow in another place and wouldn’t do what I wanted it to do.

My best understanding is that PTSD post major surgery is a real thing. I don’t really want to say that it is ‘normal’ but I would like to, because with me, it was pretty much taboo to discuss this with my neurosurgical team and I was made to feel like it was my fault. There were other reasons why I was brushed aside and dismissed but I do feel that nobody, absolutely nobody should have to carry this kind of fear around with them, particularly during sleep.

I work very very hard with self-care to cope and have as much contact with animals, plants, growing fruit and the lovely seaside as possible. This ‘dissolves’ the freezing terror moments for me. But, I would say that I went to the very edge before I was taken seriously and there are now some tenuous possibilities of seeing a psychologist/psychiatrist/neuropsychologist.

I always say that I will see or speak to anybody but in the meantime, I carry on working as hard as possible with the self-care stuff and try and encourage my poor brain to let all these splintered images pass through me and go up into the sky. I try and view my brain differently now as a microprocessor that I have to care for, to stop it running away and instead I think of my heart as being my body’s HQ. (Hope that’s not too vague and weird as a thought… :thinking:)

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Hi Stuartt, I feel so many similarities with my own story here. I had my bleed 4.5 years ago but didn’t have surgery, instead having gamma knife. So I didn’t have the ‘surgical terror’ but have had the ongoing anxiety of possible further bleeds while the radiation does its thing.

After my bleed I found that I was telling anyone who would listen about my whole experience, whereas now I generally don’t until it comes up. I think there were two reasons I was keen to (over?) share.

Firstly I wanted people to know that there was a reason I may be a little tired/cranky/slow/otherwise emotional or whatever I was feeling that day. I felt like I needed to create that buffer/excuse for how I may have come across. In hindsight they probably wouldn’t have noticed how hard I was having to work to have a simple conversation - I didn’t have aphasia or any serious problems, I think I was just generally traumatised from the bleed and diagnosis and I think my whole brain was irritated by the bleeding/swelling leading to these symptoms.

Secondly, like you I was struggling to know what I should be feeling after the whole event but in particular in my case about having to continue to live with the AVM and the risks that entails. I was obviously very concerned about that aspect and had to adjust my outlook, but by repeating it to friends and acquaintances, and explaining how lucky I’ve been and how I’ve adjusted to the situation, I think it actually helped me process the whole thing and - adjust! Telling the story and taking in the reactions has been a way to rehearse how to explain it in the way that seems the ‘most ok’ it can be, and the reactions have improved or been more affirming over time. I didn’t realise this until I read your post but now it’s super clear to me!!

All the best,
Jonny

Hi Merl - I’m sorry you had so many repeat surgeries, but may I ask why? My 10 year anniversary passed last January, without any complications and zero headaches. Recently, I started with some mild headaches in all sorts of locations. I know I should see neurologist, but haven’t yet. I was diagnosed with small aneurysms after my craniotomy, but neurosurgeon felt they were harmless. Subsequent arteriograms could not locate them. I would truly appreciate knowing what complications you faced, as all this brings back an event I wish to never revisit. Ty!

@Barbo

I can tell you that Merl is not an AVM patient: he’s a member of one of our other www.bensfriends.org communities but he has had more than his fair share of brain surgery, so he can relate a lot to the situations we have in this community.

I hope this helps.

Best wishes,

Richard

Hey Barbo

Ohh, that’s a question I put to the medicos too. With each surgery they’ve told me ‘All fixed’ and although the surgeries have dealt with an issue, it hasn’t been ‘fixed’ at all. Only last week I had an annual follow up appointment, thinking it would be same, same. It wasn’t. And now they want to operate again. This will be No.7 and I’m dreading it.

Richard is correct, I do not have an AVM. I have an astrocytoma. It’s putting pressure on the wall of the aqueduct, the drain tube which runs down our spine, so the fluid, cerebral spinal fluid (CSF) can’t get out. They inserted a plastic tube called a shunt to drain it and then reduced the size of the growth itself, but it’s expanded again sending my system haywire. It’s growing too close to brain structures I need to be removed completely.

Me too, I tried to ignore it all. Daily headaches are nothing unusual for me, even bad ones. But the longer I leave it all the more complicated it all gets, so now I’m at the point of ‘a decision has to be made’. I just didn’t want to be making the decision.

My advice: Get it checked out. The longer you leave it the more complicated it all gets.

Merl from the Modsupport Team

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Hey Richard,

It’s been a little bit since you replied, but I am doing well. I got a new job I am excited about. I’m a little apprehensive about my next scan, but there is nothing I can do about that until then.

Hope you are well,
Stuartt

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Thank you for the support, everyone. To those here that have been through a second round of surgeries/diagnoses after the first, I can’t imagine your strength. The thought makes me melt. I hope you all are doing okay.

Best,
Stuartt

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@Stuartt

Focus on the job, that sounds great! I know it’s difficult to ignore but as you say, there’s nothing to do about anything health-wise until your next scan, so best thing to do (to the extent you can) is ignore it and keep your mind busy with other stuff.

When my wife has something amiss, it often as not seems to happen late in the week – Thursdays to Saturdays – and either it is too late to make an appointment with the doc, or she makes an appointment and she can’t get one until Monday morning or maybe Tuesday. Consequently she mithers her way through the whole weekend, completely distracted by the appointment and completely off the scale where not enjoying life is concerned.

Come Monday or Tuesday, she goes to the doc and either gets sent away with “Nothing to worry about, Mrs D” or some minor meds to be taking for a while. Yet every time, she bothers her way through half the week.

My approach? You can’t do anything about it until Monday morning. If you’re going to bother about it, you’re allowed to do it then. Everybody understands that we get bothered. It’s just good not to do it when there’s nothing you can do about it.

So, I know it’s difficult (and might be impossible) but to the extent you can, put it out of your mind until the appointment itself. Keep your mind busy with things that need you to focus on them and don’t miss out on enjoying the summer.

I hope that sometimes my random thought-shares help someone. Best wishes,

Richard

I hear you. I’m sorry you had to go through all that. I also find that being in nature helps me. I often think about a river near me and about how it’s always flowing regardless of whether I feel panicked or afraid. It brings me peace. How are you doing?

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